Demographics
A total of 15 participants, nine health care professionals and six patients participated in the cognitive debriefing interviews between May 2018 and January 2019, excluding the four clinicians who conducted the focus group interviews. Participants were recruited purposively from a specialist palliative care outpatient/home care unit and a palliative day care unit, to cover for different palliative care needs as well as health care professionals’ experience in both general and specialist palliative care. The patient group covered variation in terms of gender, educational status, cancer diagnosis, setting of care provision and disease phase. Inclusion criteria for patients were age of > 18 years old, have palliative care needs, being able to provide informed consent, complete the IPOS tool and native speakers in Greek. The clinician group included 4 nurses, 2 physicians and 3 social workers with a varied experience in palliative care from one to seven years. The focus group interviews were 120–150 min long. Time to complete the IPOS tool ranged from 7.7 min to max 11.24 minutes in the patients’ group and 4,4–10 minutes in the HCP’s group. Participants’ characteristics are reported in Tables 1–2.
Table 1
Focus groups' participants' role and background
Profession | Place of work | Role in the study |
Nurse | Palliative Day Care | Clinician |
Social worker | Palliative Home Care | Clinician |
Physician | Palliative Home Care | Clinician |
Nurse | Palliative Day Care | Clinician |
Social worker | Palliative Home Care | Clinician |
Nurse | Palliative Home Care | Clinician |
Nurse | Palliative Home Care | Clinician |
Nurse | Palliative Home Care | Clinician |
Social worker | Palliative Home Care | Clinician |
Nurse | Oncology setting & Academia | Conductor of the focus group |
Nurse | Academia | Co-conductor of the focus group |
Physician | Oncology setting & Home Care | Conductor of the focus group |
Physician | Palliative Home Care | Co-conductor of focus group |
Table 2
PATIENTS' DEMOGRAPHIC AND CLINICAL DATA
Total number of patients | | N (6) |
Sex | Female | 4 |
| Male | 2 |
Age (years) | Median (min-max range) | 75 (56–82)) |
Marital status | Married | 3 |
| Widowed | 3 |
Education | University / Technological | 4 |
| Secondary education | 2 |
Diagnosis | Breast cancer | 3 |
| Lung cancer | 2 |
| Colon cancer | 1 |
Care Setting | Palliative home care | 3 |
| Palliative day care | 3 |
Disease Phase | Stable | 4 |
| Unstable | 2 |
IPOS overall score | Median (min- max range) | 25 (16–40) |
Time to IPOS completion | Median (min-max range) | 10’3” (7’7”-11’24”) |
Phases I-IV
Phase I
We looked to identify differences throughout existing translations of IPOS terms contained in other questionnaires on quality of life and possibly palliative care in Greek, through a literature review. Twenty-two questionnaires translated from English to Greek were identified which included terms used in IPOS.
Some items were translated consistently across the different tools, such as pain (πόνος), nausea (ναυτία), vomiting (έµετος-έµετοι) and constipation (δυσκοιλιότητα). However, terms related to anxiety, depression, shortness of breath, sore or dry mouth and lack of energy received various translations with slightly different conceptual meanings (Table 3). The terms ‘poor mobility’ and ‘at peace’ were not identified in any of the retrieved tools.
Table 3
Alternative translations for IPOS items
IPOS item | Greek translations |
Anxiety (feeling anxious) | άγχος’; concerned -‘ανήσυχος’; irritable- ‘ευερέθιστος’; tense-‘σε ένταση’ |
Depression (feeling depressed) | ‘κατάθλιψη/ καταθλιπτικά’; sad/sadness - ‘θλίψη, λυπηµένος/ λυπηµένα’ |
Shortness of breath | να κόβεται η ανάσα σας’, ‘δυσκολία στην αναπνοή΄, ‘γρήγορη αναπνοή’ ,‘λαχάνιασµα’; dyspnoea’- ‘δύσπνοια’ |
Weakness/ Lack of energy | αίσθηµα αδυναµίας, εύκολη κόπωση, εξάντληση, µειωµένη ενέργεια’ |
Sore or dry mouth | dry mouth- ‘ξηρό στόµα’, ξηροστοµία; mouth sores- ‘στοµατικά έλκη/έλκη στόµατος’ |
The alternative translations identified in the literature were further discussed within the next step of interviews with senior clinical members of the palliative care units. A conceptual definition meeting followed results from the interviews and included the views of the members of the IPOS team who were involved in translations of other tools. Some concerns were expressed with regards to the direct translation of some terms and their cultural appropriateness in Greek. The debates were focused on the terms: shortness of breath, lack of energy, poor (appetite/mobility), feeling depressed and information. (See Table 4)
Table 4
Conceptual definition consensus
Shortness of breath | The exact translation would be ‘κοντανασαίνω’, ‘λαχάνιασµα’, ‘δύσπνοια’. However previous experience had shown that patients understand better the term ‘δυσκολία στην αναπνοή’ which would be translated as ‘difficulty in breathing’ in English. |
Lack of energy | originally translated as ‘έλλειψη ενέργειας’. However, there were suggestions to use the term ‘ενεργητικότητα’ as a possible alternative, which is the action performed if the person has energy. |
Poor (appetite/mobility) | The term ‘poor’ cannot be translated word for word into Greek. The term ‘µειωµένη όρεξη’ or ‘περιορισµένη κινητικότητα’ which means ‘reduced’ and ‘limited’ are more lay Greek expressions for poor appetite and poor mobility respectively. |
Feeling depressed | This term for depression initiated a lot of discussion since the term depression points a medical diagnosis, similar to anorexia. The medical term encompasses not just the element of sadness which patients have but also the element of apathy which is not present. Hence the term ‘νιώθω θλίψη’ which is equivalent to ‘feeling sad’ was thought to be more appropriate. However, no consensus was reached for this term. |
Information | The proposed term for information was ‘πληροφορίες’. However, clinicians pointed that within the context of health care (related to diagnosis, prognosis) often the term ‘ενηµέρωση’ (updating) might be more accurate and more frequently used by clinicians. |
Phase II: Forward translation
There were grammatical and content differences in the first translation stage, regarding item terms, questions phrasing as well as the Likert response categories. Dissimilar translations were found in 6 items: item 3 ‘lack of energy’, item 6 ‘poor appetite’, item 8 ‘sore or dry mouth’, item 10 ‘poor mobility’, item 11–12 ‘have you been feeling’, item 14 ‘at peace’ and item 17 ‘problems. The Likert scale responses that had alternative translations were found in question 2: (‘slightly’, ‘severely’, ‘overwhelmingly’) and question 3–8 (‘occasionally’, ‘most of the time’, ‘always’). Question 2 was found to have grammar and syntax differences with regards to tense, length of sentence and request phrasing (imperative).
The different roles of the two translators (doctor/ lay member) proved very useful, as they provided different insights. The clinician highlighted the terms used in everyday clinical practice, whilst the lay member provided better options (lay friendly) with general understanding of instructions and question formulation. In addition, we consulted a linguist with regards to certain grammar and syntax discrepancies, to confirm clarity of the instructions, as well as semantic equivalence with regards to synonym terms.
Considering the literature review and the subsequent interviews, we reached consensus with the forward translation version. The forward translations highlighted the differences identified during phase I and were resolved during discussions with translators and translator mediator. It resulted in semantic modifications for the 3rd, 6th, 10th and 14th items. Specifically, the term ‘unconscious’ (διαταραχή συνείδησης- staff version) was also modified to reflect its specificity in Greek.
Despite the more complex forms, we agreed to include both gender options (e.g., s/he), opting for gender- inclusive language.
Phase III: Backward translation
Both backward translations were very close to the original IPOS tool. There were some differences in the backward translation, specifically with regards to verb tenses and synonym choices, rather than the direct translation of words. Differences were found in 3 items: ‘feeling depressed’ (back translated as feeling distressed/ sadness), ‘feeling anxious’ (back translated as feeling anguish/ worried) and poor ‘appetite/ mobility’ was back translated as anorexia- loss of appetite. Another synonym was used specifically for mobility. The Likert response ‘overwhelmingly’ was back translated as ‘unbearably’, whereas slightly as mild. The reported dissimilarities in the above terms, already identified as holding some challenges in previous phases, were further discussed with the two translators and the moderator to find the best alternative.
Phase IV: expert review
The expert review discussions focused on both item terminology, language formality and Likert scale responses, which remained unresolved. Discrepancies in the backward translations for anxiety, depression and poor (appetite/ mobility) were also discussed and agreed to further explore in the following phase. Specifically, further discussions were necessary for the term ‘shortness of breath’, which was translated to ‘difficulty in breathing’ (Δυσκολία στην αναπνοή). Similarly, the term ‘Poor mobility’ was debated between synonymous terms (µειωµένη/ περιορισµένη κινητικότητα) and was agreed to test both terms at the cognitive debriefing phase. The term ‘poor appetite’ was translated as either ‘anorexia’ (ανορεξία) or ‘reduced appetite’ (µειωµένη όρεξη), with the latter term being agreed as friendlier but also less confusing (clinical diagnosis). No consensus was reached for the term ‘feeling at peace’, with different terms being suggested to be explored during the cognitive debriefing phase (ειρηνικά, ειρήνη µέσα σας, ψυχική ηρεµία). The term ‘unconscious’ (staff version- grading) created ambiguity. The translators and mediator considered that the exact translation of the term in Greek,"αναίσθητος", but the expert committee argued that the term is used for anaesthetized patients more often and thus was not appropriate. They instead suggested the term "consciousness’ disruptions" (διαταραχές συνείδησης) as per phase II, although consensus was not agreed and thus both terms were referred to the next phase testing.
A debate with regards to use of appropriate tense highlighted the need to clarify if items refer to an incident in time, or a continuous state. Similarly, discussions regarding Likert responses focused on identifying the subtle changes in between the options, so that grading between options becomes more obvious.
Question and instruction formulation was also debated within the expert review team, considering either the singular(informal) or plural (formal/polite) form, often used in Greek. The team agreed to a simple, but rather formal language, so that the tool addresses patients in a polite but clear manner. Lastly, question 9 on practical problems was reviewed to a better grammatical form in Greek (comment by the linguist).
Phase V Cognitive debriefing
The cognitive interviews resulted in revisions of 5 out the 17 items of the translated IPOS tool (Table 5). Both focus group interviews showed that most questions and answer options worked well for the majority of both patient and professional participants. Reported difficulties were mainly comprehension problems and a few concerned judgements. No problems were reported with retrieval and response formulation. The comprehension and judgement challenges identified in the pre-final version were successfully resolved in the cognitive interviewing phase. The results are presented under comprehension, judgement, and acceptability. The interview results and the changes made based on them are shown in detail in Table 6.
Table 5
IPOS changes after cognitive Interviews Final CHANGES
Items | Terms in the English version | Revised |
| What have been your main problems or concerns over the past 7 days? | No |
| Below is a list of symptoms, which you may or may not have experienced. For each symptom, please tick one box that best describes how it has affected you over the past 7 days. | Yes |
1 | Pain | No |
2 | Shortness of breath | No |
3 | Weakness or lack of energy | Yes |
4 | Nausea (feeling like you are going to be sick) | No |
5 | Vomiting (being sick) | No |
6 | Poor appetite | No |
7 | Constipation | No |
8 | Sore or dry mouth | No |
9 | Drowsiness | No |
10 | Poor mobility | No |
| Please list any other symptoms not mentioned above, and tick one box to show how they have affected you over the past 7 days. | Yes |
| Over the past 7 days: | |
11 | Have you been feeling anxious or worried about your illness or treatment? | No |
12 | Have any of your family or friends been anxious or worried about you? | No |
13 | Have you been feeling depressed? | Yes |
14 | Have you felt at peace? | Yes |
15 | Have you been able to share how you are feeling with your family or friends as much as you wanted? | No |
16 | Have you had as much information as you wanted? | Yes |
17 | Have any practical problems resulting from your illness been addressed? (Such as financial or personal) | Yes |
| How did you complete this questionnaire? | No |
Table 6
Issues regarding IPOS completion identified in the cognitive debriefing phase
IPOS item (prototype) | IPOS answer options (prototype) | Aspects identified with supporting quotations | Revised IPOS item after focus group | Revised IPOS answer options after focus group |
Q1. What have been your main problems or concerns over the past 7 days? (P) What have been the patients’ main problems over the past 7 days? (S) | Open questions with three lines for answers | Good comprehension (14/15) of the question. Participants welcomed the term προβλήµατα and perceived it as a broader term than symptoms, which can include concerns and family issues. …I think that ‘problems’ is the right word, because it does not refer only to symptoms, it can be other things, such as things that have to do with the family or the carer (S-3 I was thinking of the patient as a patient, but also the family’s problems. All the problems in this household (S-2) Yes, it is very simple/clear. For me is the fear of the disease (P1) You mean the 3 major issues because I have many, not just 3. It is the colostomy management, …, family pressure, financial issues (P5) A few participants suggested to include the phrase ‘that bothered you in particular’ to help respondents to prioritise their key problems. Can you add the phrase: that they particularly bothered you, to make it clear that you want the ones at the top of list? (P3) | No changes to staff version What are the main problems or concerns that particularly bothered you over the past 7 days (P) | Remains an open question with three lines for answers |
Q2. Bellow is a list of symptoms, which you may or may not have experienced. For each symptom, please tick one box that best describes how it has affected you over the past week (P) Please tick one box that best describes how the patient has been affected by each of the following symptoms over the past 7 days (S) | Not at all, Slightly, Moderately, Severely, Overwhelmingly Cannot assess (e.g., unconscious) (S) | Good comprehension (10/15). 4 participants found the question too long and wordy. In order to answer this question, I had to read it three or four times, I somehow lost the meaning. I believe this is not the right way to express it, anyway, it is not easy to understand (S-7) The question is too long... in the beginning…at least this one and we have said it is difficult to grasp its meaning (S-3) Both patient (5/6) and HPs (5/9) participants revealed a confusion of the meaning of the question, as to whether it assessed severity or impact (how versus how much). It asks about the grade of the following symptoms (P-3) Here it talks about the intensity… How much it has affected the patient. I think this has to do with both the intensity but also how it might have changed their ability to function… not just the grade… It includes many parameters, not just the severity of the symptom (S-3,4) To be honest, I have been carried away by some of the symptoms and considered more the intensity rather than the impact (P-7) When talking about impact, I think it is a composite of many factors, such as severity, intensity, length of persistence, repetition pattern, influence on functionality. (S-3) It is matter of grade (P-4) All HP participants found answer options clear and grading sufficient, with the exemption of the example of the last one (i.e., unconscious/ αναίσθητος). The term unconscious was reported to have alternative meanings: being insensitive, or indifferent (3/9) or somebody under anaesthesia (1/9). Unconscious does not really apply to me; it refers to operating theater (S-8) I think that the word “unconscious”, in Greek culture may also have a different significance, meaning you are indifferent… (S-9) A phrase that describes level of consciousness (4/9) or ability to communicate (3/9) was proposed. Overall consensus was on level of consciousness. Compromised level of communication, for whatever reason, …, low level of communication(S-3) confusion or confused, something like that that we use in our everyday practice (S-8) Perhaps we could use loss of consciousness (S-8, S-7) Patients found challenging the rating of symptoms when those fluctuated during the measured period. (See more on symptoms bellow) | Here is a list of symptoms that you may or may not have experienced. For each symptom, please choose the corresponding box (only one) that describes best how it affected you over the past 7 days (P) Please choose the box (that describes better how each of the following symptoms affected the patient over the past 7 days (S) | Not at all (Καθόλου) Slightly (ήπια) Moderately (µέτρια) Severely (σοβαρά-S, πολύ-P) Overwhelmingly (ανυπόφορα) It cannot be assessed (e.g., reduced level of consciousness) Δεν µπορεί να εκτιµηθεί (π.χ. απώλεια του επιπέδου συνείδησης) |
Pain | | Good comprehension by all participants Some patients (3/6) found it hard to judge the severity of pain and how it affected them, as it fluctuated over the 3 or 7 days. They solved this problem by estimating a mean value over the three days. | Pain (Πόνος) | |
Shortness of breath | | Good comprehension by all participants. A debate between the terms dyspnea and difficulty-in-breathing led to a consensus towards the latter term. The term difficulty in breathing (=Δυσκολία στην αναπνοή) was understood as a better description of dyspnoea regardless its cause (e.g., physical, psychological) I prefer the difficulty in breathing as it describes the feeling of dyspnoea, however it might be experienced by the patients (e.g., due to disease progression, depression, panic attack (S-4) … If refers to breathing, if it is unobstructive or not. For whatever reason…and whatever feeling it is expressed (S-3) Difficulty in breathing might mean air is cut short (S-8)) the air is not enough (P-3) I cannot take a deep breath (P-4) | Difficulty in breathing (Δυσκολία στην αναπνοή) | |
Weakness or lack of energy | | Good comprehension of the word weakness (=Αδυναµία) (15/15). Participants explained it as a term describing tiredness, and exhaustion. When I say weakness, I can think of fatigue… I can think of exhaustion (P-1& P3) Thinking of patients, they usually say, I feel tried, hence it seems weakness has to do with feeling fatigued (S-6). Weakness also refers to mental or spiritual fatigue, not being in the mood, feeling low (P-3) There was a debate about the phrase lack of energy (= Έλλειψη ενέργειας/ ενεργητικότητας). Professionals favored it (8/9) and considered it as a synonym to weakness (S3); or related to vigour (= preferred term in Greek: ενεργητικότητα) (S1, S3, S4, S7) and some connected it to activities performance (δραστηριότητες) (S-4, S-8)) Weakness is not enough; lack of energy refers to the activities the patients used to do etc (S8) I thought of the activities the patient reports over the last few days… if he had to reduce his activities because he felt tired…(S4) Patients preferred the Greek term (ενέργεια) for energy (6/6) Lack of energy was then described as not feeling like doing anything, or not willing to leave the chair. Lack of energy (ενέργεια) is broader than energy (ενεργητικότητα), I prefer the first one (P-1). What can I say, there are days I do not want to hear anyone (P6) I do not have energy means I feel like doing nothing, not feeling the need to move from the sofa, or going out (P-3). Lack of energy means even if I want to go for a walk, I don’t feel like I can…, feeling weak or feeling low (P-2) | Weakness or lack of energy (Αδυναµία ή Έλλειψη ενέργειας) | |
Nausea (feeling like you are going to be sick) | | Good comprehension by all participants and overall consensus (15/15). Participants welcomed the explanation in the brackets as a helpful description. I like the explanation in the brackets. Maybe nausea is enough for staff, but for some patients the explanation might be useful (S-5). | Nausea (Ναυτία) Feeling like you are going to be sick (Τάση για έµετο) | |
Vomiting | | Good comprehension by all participants, overall consensus (15/15). Difficulties with the rating were reported, as some participants tried to rate the severity of the symptom, not its impact. | Vomiting (Έµετος) | |
Poor appetite | | Good comprehension by all participants. The term poor appetite (=Μειωµένη όρεξη για φαγητό) was preferred than anorexia. As appetite might be connected to many things in Greece, the word ‘for food’ was agreed to be added, for clarity. I don’t feel like eating anything (P-2) | Poor appetite (reduced appetite for food: Μειωµένη όρεξη για φαγητό) | |
Constipation | | Good comprehension by all participants (15/15) This is a common symptom that really affects patients, and they often mention it even when you don’t ask (S-8) | Constipation (Δυσκοιλιότητα) | |
Sore or dry mouth | | Good comprehension and agreement to both terms by HPs (8/9). Terms considered to be inclusive of overall mouth problems from dry mouth to inflammation and infection. Yet, patients gave examples referring to dry mouth only (3/6) I like the term ‘sore mouth’ as it can include many problems, such as ulcers inflammation, and stomatitis (S-8) Sore mouth might include symptoms related to mucositis, ulcers, etc. (S-4) For dry mouth… I need to always have a glass of water next to my bed, otherwise the suffering is unbearable(P-4) My mouth and my tong are dead, so dry that I cannot even swallow my saliva (P-2) My tong and my lips are so dry that I feel them numbed(P-5) | Sore or dry mouth (Ερεθισµένο ή ξηρό στόµα) | |
Drowsiness | | The term was understood well by most participants (13/15). It was related to feeling sleepy and was measured against its impact on everyday life. Patients describe drowsiness as feeling sleepy which affects their everyday life (S-2) When they feel sleepy and cannot respond the activities of their daily life (S-4) I have the opposite, insomnia stress and cannot sleep (P-2) | Drowsiness (Υπνηλία) | |
Poor mobility | | Good comprehension and consensus on the term by all participants (15/15) I like this as it makes clear that mobility is different from energy (P-5) For me it is difficulty with walking, ability to reach out for things (P-1). | Poor mobility (Περιορισµένη κινητικότητα) | |
Please list any other symptoms not mentioned above and tick one box to show how they have affected you over the past 7days. (P) Please list any other symptoms and tick one box to show how you feel each of these symptoms has affected the patient over the past 7 days (S) | | Good comprehension and consensus achieved by all participants after some minor changes in the phrasing of a few words in the question. Both versions were suggested to use past tense. Patient version kept the ‘tick a box- only one’ whilst staff version agreed to ‘choose a box’. To make the question concise, professionals suggested to replace the ‘any other’ with ‘additional’. (S-2) Patients found the question useful as it gave the opportunity to add further symptoms but also break down symptoms reported above. I wrote symptoms not mentioned above (P-3) I wanted to be more specific with regards to poor mobility. It has to do with my left arm, so I added here(P-1) | Please list any other symptoms you had and not mentioned above and tick the box (only one) that describes better how they have affected you over the past 7 days. (P) Please list any additional symptoms and choose a box to show how you think each of them has affected the patient over the past 7 days (S). | |
Q3. Over the past 7 days, have you been feeling anxious or worried about your illness or treatment? (P) Over the past 7 days, has s/he been feeling anxious or worried about his/her illness or treatment? (S) | Not at all, occasionally, sometimes, most of the time, always Cannot assess (e.g., unconscious) | Good comprehension, overall consensus by all participants. Two HP respondents (S-4,6) wished anxiety was not restricted to disease or treatment only. It somehow narrows the scope and often it is more than treatment and disease that patients feel anxiety (S-6) What if the patient is anxious about other issues, beyond the disease and treatment. Do we still score for it? (S-4) The grade of response was discussed. The difference between occasionally and sometimes was found unclear to 3 HPs and 2 patients (5/15). ‘Occasionally’ was originally translated as ‘Περιστασιακά’ and changed to ‘λίγες φορές’, for staff version, in concordance with the patient version. ‘Always’ was originally translated as ‘πάντα’ and changed to ‘συνεχώς’ for both version. Cannot assess (e.g., unconscious) changed to e.g., ‘reduced level of consciousness’, following responses to Q2. | Over the past 7 days, have you been feeling (=νοιώθατε) anxious or worried about your illness or treatment? (P) Over the past 7 days, has s/he been feeling (=ένοιωθε) anxious or worried about his/her illness or treatment? (S) | Not at all (Καθόλου) Occasionally (λίγες φορές) Sometimes (αρκετές φορές) most of the time (τις περισσότερες φορές) (P, S) always (P: πάντα, S: συνεχώς) It cannot be assessed (e.g., reduced level of consciousness- ‘απώλεια επιπέδου συνείδησης’) (S) |
Q4. Over the past 7 days, have any of your family or friends been anxious or worried about you? (P) Over the past 7 days, have any or his/her family or friends been anxious or worried about the patient? (S) | | Good comprehension by all participants. Variation in assessing anxiety of different members of family/ friends. Professionals argued of not having access to patient’ friends unless directly involved in their care (4/9). Not sure the relevance of friends, unless involved in their care (S-9) Cannot assess the friends’ network of the patient(S-2) Also, hard to quantify for a group of people, especially if there is variation at anxiety levels (3/9). Patients could identify those important to them- not dilemma on who to consider (5/6). … are we talking about the children, or the main carer? Who to consider?... children might be more sensitive and thus more anxious, comparing to a spouse. (S-6) Do you mean the nuclear family or the broader family here? (S-8) | Over the past 7 days, have any of your family or friends been anxious or worried about you? (P) Over the past 7 days, have any or his/her family or friends been anxious or worried about the patient? (S) | |
Q5. Over the past 7 days, have you been feeling depressed? (P) Over the past 7 days, do you think s/he felt depressed? (S) | | Patients reinforced the chosen Greek terms for ‘feeling depressed’ (= Νιώθατε θλίψη) instead of the word ‘κατάθλιψη’. Different synonyms were discussed (λύπη, στεναχώρια) but the original term was perceived as conceptually broader, encompassing different dimensions (5/6). All professionals agreed to the term (9/9) ‘Sadness, mixed with stress shape the ‘feel depressed’; (P-3) Feeling depressed might also include a sense of isolation and subsidence (P-2) It is the feeling that compromises joy…and your tranquility (P-5) …It is when you are sad, feeling in a tide place, feeling suppressed… the feeling of not having enough energy to cope (P-6) | | No changes made. Greek version: ‘Νιώθατε θλίψη;’ (P) ‘Νοµίζετε ότι ένιωθε ο/ή ασθενής θλίψη’; (S) |
Q6. Over the past 7 days, have you felt at peace? (P) Over the past 7 days, do you think s/he felt at peace? (S) | Always, Most of the time Sometimes Occasionally Not at all (P, S) Cannot assess (e.g., unconscious) (S) | The social spiritual or emotional context of the Greek word peace (=ειρήνη) was discussed, ad agreed to the meaning of tranquility/ serenity. (13/15) Two HP preferred the word ‘ειρηνικά’, but some patients highlighted its relevance to religion terminology and thus not relevant to all. ‘… when the priest wishes for peaceful ending of life… internal piece’ (P-5) ‘Feeling at peace is often used in church, not appropriate for everyone (S-3) ‘I prefer the inner serenity (ψυχική ηρεµία), it reflects better the inner state of peace, because being at peace might relate to the social context, peace with others.’ (P-3) I like more the feeling calmness, internal serenity, quietness, tranquility, not so much feeling peacefully (P-6) | Over the past 7 days, have you felt inner serenity (Νιώθατε ψυχική ηρεµία)? (P) Over the past 7 days, do you think s/h felt inner serenity (Νοµίζετε ότι ένοιωθε ψυχική ηρεµία)? (S) | Always (συνεχώς) Most of the time (τις περισσότερες φορές) Sometimes (αρκετές φορές) Occasionally (λίγες φορές) Not at all (Καθόλου) (P, S) It cannot be assessed (e.g., reduced level of consciousness- απώλεια του επιπέδου συνείδησης’) (S) |
Q7. Over the past 7 days, have you been able to share how you are feeling with your family or friends? (S) Over the past 7 days, has the patient being able to share how s/he is feeling with his/her family or friends as much as s/he wanted? (S) | | Good comprehension by all participants and examples shared to illustrate the importance of the question. Participants expressed a difference of importance between family and friends. Some patients objected the reference of family and friends as of equal alternatives. (3/6) ‘First comes the family and then friends. Why using or?’ (P-4) ‘Family and friends are not the same thing. I wouldn’t put them in the same question’ (P-2) ‘… how about phrasing it: “share your feelings with your family and maybe your friends”, to give priority to the family’ (P-3) | Over the past 7 days, have you been able to share how you are feeling with your family or friends? (S) Over the past 7 days, has the patient being able to share how s/he is feeling with his/her family or friends as much as s/he wanted? (S) | |
Q8. Over the past 7 days, have you had as much information as you wanted? (P) Over the past 7 days, has the patient had as much information as s/he wanted? (S) | | The term ‘information’ (= πληροφόρηση) was debated in comparison to term ‘briefing/ updating’ (= ενηµέρωση). Consensus reached for the term ‘ενηµέρωση’, given that it is the common term used in clinical practice. (9/15) ‘I think updating(ενηµέρωση) is better than information’ (πληροφόρηση) (P-2) … I agree with this, maybe it is. (S-8) ‘We usually invite patients and families for ‘ενηµέρωση’, not ‘πληροφόρηση’. We don’t use this term in the clinic.’ (S-3) Clarity was requested with regards to being informed ‘by whom (6/15)’ and ‘about what’ (5/15). Patients included families as being information givers (4/6). ‘ As for information, I thought of medical issues, but also more general info such as the team, the service, who we are, psychosocial resources, etc…’(S-9) ‘When we say information, do we mean by the doctors or also our family? (P-1) Correct, information comes from your social environment as well (P-4). Patient participants (3/6) found it difficult to rate satisfaction with information, as information level may vary according to type of information. ‘Let’s say, I put occasionally because I was happy with treatment information, but not so with illness progress, or other matters.’ (S-9) ‘I agree, I did not have enough info re medical issues by my doctor, but I was happy with the social worker about psychosocial matters’ (S-4) | Over the past 7 days, have you had as much information as you wanted (Τις τελευταίες 7 ηµέρες είχατε τόση ενηµέρωση όση θα θέλατε? (P) Over the past 7 days, has the patient had as much information as s/he wanted? (Είχε ο ασθενής τόση ενηµέρωση όση θα ήθελε;) (S) | |
Q9. Over the past 7 days, have any practical problems resulting from your illness been addressed? (Such as financial or personal) (P) Over the past 7 days, have any practical problems resulting from his/her illness been addressed? (Such as financial or personal) (S) | Problems addressed/ No problems (P, S) Problems mostly addressed (P, S) Problems partly addressed (P, S) Problems hardly addressed (P, S) Problems not addressed (P, S) Cannot assess (e.g., unconscious) | The proposed term for problems was debated and agreed to change from ‘ζητήµατα (= matters) to ‘προβλήµατα’. Most participants thought it was clearer and corresponded better with the answer options (10/15). The offered example in brackets was valued for clarity by all. The responses formulation and grading seem to have some issues: The first response was found by some people confusing, given that it incorporated two different responses. The recommended that πλήρως (= fully) καθόλου (= not at all) to be included in the grading of the answer options. Debate about the grading of the response. There was a consensus that the first option included two answers as one option. Participants thought this might be confusing and suggested alternative expressions that were more descriptive (8/15). Some words changed in the grading, to make the grade of the options more distinctive. Some variation between staff and patient options was recorded. ‘The problems were fully addressed’ / ‘there were problems and were resolved’ (S-1,8,4) ‘Problems were addressed’ (P-5,3,6) ‘… no problems’ (S-1,8,4); ‘there were no problems’ (S-1,2,4,7; P-2,5,6) | Over the past 7 days, have any practical problems (=προβλήµατα) resulting from your illness (νόσο σας) been addressed (such as financial or personal)? (P) Over the past 7 days, have any practical problems (=προβλήµατα) resulting from his/her illness (=την νόσο του/της) been addressed? (Such as financial or personal) (S) | Problems were addressed/ There were no problems (Τα προβλήµατα αντιµετωπίστηκαν/ δεν υπήρχαν προβλήµατα) (P) Problems were fully addressed / there were no problems. (Τα προβλήµατα αντιµετωπίστηκαν πλήρως / δεν υπήρχαν προβλήµατα) (S) Problems were largely (=σε µεγάλο βαθµό) addressed (P, S) Problems partly (= µερικώς) addressed (P, S) Problems hardly (=µόλις που) addressed (P, S) Problems not addressed (at all = καθόλου) (S) Cannot assess (e.g., reduced level of consciousness) (S) |
Q10: How did you complete this questionnaire (P) | On my own With help from a friend or relative With help of from a member of staff | No problems or concerns with Q10 | How did you complete this questionnaire (P) | On my own With help from a friend or relative With help of from a member of staff |
P: Patient, S: Staff, HP: health professional |
Changes made to IPOS questions or answer options after cognitive interviews are typed in bold. |
Comprehension
Comprehension difficulties were identified in both patient and health care professional interviews. Participants welcomed the term problems (προβλήµατα) and perceived it as a broader term than symptoms, even though they sometimes found it difficult to distinguish them and listed them interchangeably in Q1 and Q2b. We, thus, decided to rephrase the first question, highlighting the troubling nature of the problem/ or concern for the patient. We also changed the phrase ‘any other symptoms’ to ‘any additional symptoms’ in the staff version, to highlight that the question is looking for any further symptoms in relation to the 10 items in previous list (Q2a), per their request.
Pain, shortness of breath, nausea, vomiting, poor appetite, mobility drowsiness, sore or dry mouth and constipation listed in question 2 were well understood by all participants. Comprehension difficulties were identified with the terms: lack of energy (Q2)/ feeling depressed (Q5)/ feeling at peace (Q6).
Lack of energy
Two synonyms (Αδυναµία ή έλλειψη ενέργειας) received interchangeable meaning by different participants. Weakness or lack of energy referred to physical activity/ mobility by some participants, whilst for others it referred to a state of mental or psychological languor. Inclusion of both terms satisfied all participants
Feeling depressed
Two Greek terms were discussed with patients that translate to feeling depressed. Patients preferred the choice of the word ‘θλίψη’ instead of ‘λύπη’ (feeling sad). Participants expressed the view that ‘feeling sad’ is different from ‘feeling depressed’ and provided different dimensions of it (5/7). Hence the term ‘θλίψη’ was adopted.
At Peace
Some patients (3/6) connected the Greek term ‘ειρηνικά’ to inner peace as identified by the orthodox Christian religion; and some with specifically a pray for peaceful ending. This led some participants associating this term with dying and death. The Greek term for serenity (ψυχική ηρεµία) was accepted by all participants (6/6) which was discussed in the context of acceptance of the situation.
It is the feeling that compromises joy, tranquillity, internal quietness (P5)
I like more the feeling calmness, internal serenity, quietness, tranquility, not so much feeling peacefully. (P-6)
Information
Participants debated about the term ‘πληροφόρηση’ (information) versus the term ‘ενηµέρωση’ (briefing/ updating). They seem to prefer the term ενηµέρωση, [as it is used in clinical practice].
Updating, it would be better to say updating… I agree with this, maybe it is. (S-8)
Patient participants requested clarity with regards to ‘who’ provides the information (6/7) and ‘about what’ (5/6). Patients included families as being information givers and considered information coming from different resources. They were suggested to consider all types of information coming from the health care team.
‘As for information, you mean medical update, general info, psychosocial support, benefits, …?’(P-3)
‘When we say information, do we mean by the doctors or also our family? (P-1)
‘… information comes from your social environment as well, what information you mean?’ (P-4).
Practical Problems
There were some issues with this item. The term ‘ζητήµατα’ (matters) that was chosen in previous phases, was suggested to be replaced by the term ‘προβλήµατα’ (problems). Most participants (10/15) considered it more specific and better corresponding with the response options.
Also, the response options for this item(Q9) were found to be confusing by some participants (8/15), as it incorporated two different responses. They recommended the terms πλήρως (fully), καθόλου (not at all) to be included in the grading of the answer options. With regards to the option ‘being unable to assess’, the example given (e.g., unconscious), staff participants suggested the term ‘reduced level of consciousness’, with two conceptually equivalent terms (έκπτωση/ απώλεια επιπέδου συνείδησης). It was agreed to keep the second option, as commonly used within these clinical contexts.
Judgement
Some issues were reported with the structure of question 2. Some participants rated their symptom severity and not the impact. Severity of symptoms versus impact was a common difficulty (instructions of Q2) for both patient and health-care participants. Restructuring the sentence, emphasizing the focus on impact, has helped with clarifying this confusion.
The truth is that I scored thinking of severity and not of how much it affected the patient. Can you make this clearer? (S-7)
The time window “Over the past 7 days’ was considered too short for patients in the day care setting, but too long for some patients in the home care service. Choosing the appropriate version (3- or 7-days’ time interval) for patient assessment, was added in the tool instructions.
Another problem was the presence of fluctuating symptoms. Fluctuating symptoms resulted in difficulties with judging severity and impact. Patients had to rate symptoms intensity that could have had fluctuations and different impact on their experience over the past 7 days. This caused difficulties in choosing an answer. A solution was agreed to o report the mean value and not the highest intensity in the case of fluctuating symptoms. A clarification was added in the instruction manual.
I only feel breathless when I am tired. But it does not give me this option; it says not at all, slightly, etc. when I seat, I am not breathless. if I walk more then I feel it… what should I choose? (P-6)
With regards to response options in Q2, we chose different option responses for patient (severely = πολύ) and staff versions (severely = σοβαρά), following their preferences.
With regards to questions 7, participants found hard to answer about sharing feelings with friends, arguing that professionals don’t have access to patients’ friends, unless they are directly involved in the patient care. Moreover, they found hard to quantify for a group of people (if more than one family member), especially if there is variation at anxiety levels in question 4.
… I think spontaneously that this question refers to some member of the family, naturally children can be part of the family and they can be more sensitive than the carer (S-9)
do you mean exclusively the core family members and not a broader circle of people? (S-8)
With regards to response in Q8, some patients (3/6) found difficult to rate satisfaction with information, highlighting variability between different areas of provided information.
‘Let’s say, I put occasionally because I was happy with treatment information, but not so with illness progress, or other matters.’ (S-9) ‘I agree, I did not have enough info re medical issues by my doctor, but I was happy with the social worker about psychosocial matters’ (S-4)
Acceptability
The Integrated Palliative Care Outcome Scale was well accepted by both patients and health professionals. Patients and health-care professionals felt that the content and format of IPOS was appropriate, feasible, and not burdensome. Time of patients to complete the IPOS tool ranged from min 7.7 to max 11.24 minutes. All questions were considered important and none as inappropriate.
Most health care professionals stated that the questions were similar to those they used in their clinical practice. Nevertheless, the tool provided them with a more structured approach into patient assessment. Patients suggested that some of the questions were very helpful, as they served as a guide to self-assessment (especially the symptom list question- Q2). The questions referring to psychosocial needs (Q3, Q4, Q5 and Q6) were welcomed as very important. Patients stated that these questions offered an opportunity to share their more difficult and personal concerns and feelings.
Layout concerns
Difficulties in reading and filling the forms were reported by participants. Some layout changes were made to make the tool easier to complete, such as increasing the types of fonts and widening the interline space.
Question 2 was reported to be difficult to process, due to its length. The sentences were rephrased and shortened with good acceptability.
….. In order to answer this question [Q2], I needed to read it three to four times. I was lost. (S-7)
The question is too long…it is difficult to grasp the meaning (S-3)